majority or minority ME/CFS worsens only physical activity (not mental) (POLL)

[MartinK]

I'm very interested in this!
In last years I wrote with many ME/CFS patients, or read posts here, on reddit, FB groups...whatever.
After that long time, I feel like one of the few who have long-term severe and mooore seveve ME/CFS or PEM/crashes with no worsening mental activity...no brain fog, no depressions, no nothing mental problems.
Only few steps or minutes of sitting/staying makes me more severe, crashed hard, massive muscle pain and fatigue, but Im still able to work on PC, write books and make music from bed. Mental burden does nothing with my ME/CFS.

This is one of last things what really keeps me positive and looking forward.

I'm really curious if anyone have same experience - 99% dead body / 99% fresh head

 

[christiankatz]

I feel like one of the few who have long-term severe and mooore seveve ME/CFS or PEM/crashes with no worsening mental activity...no brain fog, no depressions, no nothing mental problems

I kinda envy you. You're so fortunate in that way.

It's hard to say for sure which is worse, mental or physical activity, as I don't do much physical activity now other than cleaning the house a little at a time, but before I was extremely active outdoors. Mental activity causes crashes, but getting overly emotional, including feeling too happy or excited may cause the worst crashes.

 

[nerd]

Physical makes me worse more than mental, but when I get PEM, I can still think somehow clearly. It's just a loss of orientation, disability to find words, optical overstimulation, potentially headache, that can happen together with physical symptoms. These physical symptoms also prevent me from sitting upright. I can watch movies, and if I'm overstimulated, I can still listen to audiobooks. My perception is completely present, and my subconsciousness seems to work because I know that I know things when they happen, but I can't put them into structural thoughts, can't think motivationally, can't engage in anything problem solving. When I want to do things, I forget them 10 seconds later. This is how my PEM manifests in terms of mental disability.

 

[Rufous McKinney]

Mental PEM and Physical PEM have slightly different PEM qualities.

But I went to far WORSEned ME state from mental. Just seeing people at breakfast, or talking to my daughter, or listening without interacting myself, to somebody else merely chatting.

I got a bit physcialy stronger because I had to walk a bit further to water and food. That was traded in for a suite of neurological worsenings. Which tells me more physical moving around, even if done in very small increments- caused my ME to worsen and took oh maybe a year to get a bit better again.

 

[Wishful]

Your question is slightly confusing. Brainfog and other mental dysfunctions are not activities. Activities, physical or cerebral may cause PEM, which in turn may cause physical and/or mental dysfunctions. So, I assume your poll is about physical or mental dysfunctions caused by ME or PEM.

I no longer get PEM, but when I did, I had both physical and cerebral triggers, which caused more or less the same set of symptoms, but varied in their delay. My general ME symptoms are cerebral, and were never (except for brief periods) physical.

 

[Rufous McKinney]

Brainfog and other mental dysfunctions are not activities

as far as some of our bodies are concerned, mental are activities. Thinking is an action the body executes.

 

[christiankatz]

When I want to do things, I forget them 10 seconds later.

Oh my gosh, this happens to me. It's frustrating. And sometimes when I'm talking to myself, I forget what I was saying halfway in the sentence.

 

[lenora]

Well, @christiankatz....you look as if you're still quite young, but brain fog can occur at any age.

Books helped me learn, re-learn after physical illnesses took my once excellent memory (epilepsy, autoimmune encephalitis) but I don't know if they'd help or interest you. My husband is a math guy, so his go-to has always been that....and I'm very much the opposite way. Think of your area of greatest interest and follow it. Even seeing a TV show can be challenging for many people, but we can get better at it. Remembering the lyrics to a song, writing music, a letter...things of this nature. All help and can be used.

So yes, whatever the cause it's not enjoyable to find that our train of thought is elsewhere and we can't even remember the basics. That does occur with age, I know b/c I am older, but we're just more forgiving of ourselves and may make a few trips back and forth before getting everything we went in for. Menopause doesn't help in that regard, nor does anesthetic. Just a few things that definitely make forgetfulness worse.

 

[nerd]

Oh my gosh, this happens to me. It's frustrating. And sometimes when I'm talking to myself, I forget what I was saying halfway in the sentence.

Relatable. This is why I prefer writing over chatting and calling. Usually, it takes me quite some time to find the right words and what I mean to say. Even now, I forget my main point. This is where I'd usually delete the draft and move on.

 

[christiankatz]

Relatable. This is why I prefer writing over chatting and calling. Usually, it takes me quite some time to find the right words and what I mean to say. Even now, I forget my main point. This is where I'd usually delete the draft and move on.

I absolutely relate to that too. Most of my communication is through messaging, but never instant messaging.

 

[christiankatz]

Books helped me learn, re-learn after physical illnesses took my once excellent memory (epilepsy, autoimmune encephalitis) but I don't know if they'd help or interest you.

Thanks so much, @lenora I do read a lot each day and also do a lot of writing. I believe doing these help a lot. It's nice to hear a confirmation. I'm in my 50s, and you're right, menopause doesn't help at all, LOL.

 

[andyguitar]

Mental burden does nothing with my ME/CFS.

This is one of the most interesting threads I've seen recently @MartinK and thanks for starting it. The answers are a bit of a suprise. Looking forward to hearing more from members on this subject.

 

[MartinK]

@christiankatz thank you, but it's the last ability I have left. Hope for better tomorrow.

@nerd same problems with sitting here, this is why Im bedbound. But found, when I have PEM from some activity or from small time after few minutes of sitting/staying, Im still able to do some copywriting work together with listening music.
Nothing of this mental "work" worsen or affect the length of my PEM - in my case, its like a two completely disconnected things unrelated!

@andyguitar thank you! Im still trying hard to look for other connections of my case and ME/CFS overall.

Please, I would like to follow up and go deeper - for you who ticked "only physical makes me worse", can you please briefly write here, how your CFS started? From day to day with flu like? And you know the trigger?

 

[MartinK]

I also want to say (I didn't want to mix it in POLL) - there is only one more thing what makes me worse in addition to physical activity - high temperatures, hot water... simply everything that raises the temperature in the body / muscles. Thats all.

 

[WantedAlive]

@MartinK interesting survey. I'm more aligned with your experience in that only the slightest physical exertion hits me hard within an hour or two, yet as long as I physically do nothing my body can be at peace and I can challenge myself mentally. For me it takes just 3 or 4 steps, then within an hour I'm hit with a wave of weakness spreading up through my arms and hands and my body feels like it goes into a state of panic. Its unbearable and takes days to recover. But physically doing nothing like I'm near a quadraplegic, I could do mental puzzles all day. Not every day's like that though, I have bouts where I struggle mentally, its awful.

How did my ME start? My ME/CFS started acutely after a flu vaccine, I experienced acute SIRS/sepsis, 4/5 of SOFA score. Prior to that vaccine, I had worsening dyspepsia and gastritis over a few years, so I'm suspecting I'm in the enterovirus camp but I haven't been able to test that to be sure. Other than that I seemed perfectly fit and healthy, but after that sepsis episode I went straight to mild/moderate, gone downhill ever since. I'm severe now, trying to fend off very severe.

 

[WantedAlive]

Question for you @MartinK despite not experiencing mentally-induced PEM, do you feel mental capacity has been reduced? I feel like my IQ has suffered, I'm certainly not as sharp or as quick as I used to be.

 

[hapl808]

I'm not even sure which makes me worse. I think mental exertion manifests more as splitting migraines with nausea and aura, where physical activity has more myalgia. Both have that deep 'wrongness' and complete exhaustion that accompanies PEM, along with terrible sleep, HRV, reflux, etc. If mental exertion didn't crash me I'd be in a much better place.

 

[christiankatz]

If mental exertion didn't crash me I'd be in a much better place.

@hapl808 You too, huh? Sorry! I totally relate. Migraines too.

 

[andyguitar]

I think mental exertion manifests more as splitting migraines with nausea and aura, where physical activity has more myalgia

You too, huh? Sorry! I totally relate. Migraines too.

So could it be that something triggers the migraine and that goes on to causes the other symptoms?

 

[christiankatz]

So could it be that something triggers the migraine and that goes on to causes the other symptoms?

Thanks @andyguitar I've had them for 30 years and have done all kinds of elimination diets, and nothing ever worked. And I've lived in many environments and situations, and they never leave. Also, I've seen many doctors about them, and I'm unable to tolerate meds other than Excedrin Migraine (so far), which helps sometimes. I saw a doctor about a procedure, but he said he didn't think it would work for me. Other than that, I've tried Botox, and it didn't work, although I'm thinking of trying it again, as it's been years. Thanks again for asking. I truly appreciate it. I'm lucky and only get them 3-4 days weekly, as I know people who have them every day. I haven't given up on trying to figure it out.